More than 100,000 are on lists for organ donations, but for 15 people a day, time runs out

Nicholas Lisi / The Post-Standard Stephanie Juskow, who has been on a kidney transplant list at SUNY Upstate for more than 500 days, spends time with her daughters Rebecca, 6 (left), and Emma, 4 (right), in the backyard of their home in Mattydale. "I want to see them graduate, get married and have kids."

When University Hospital added Stephanie Juskow's name to its kidney transplant waiting list in 2007, she was one of 177. Now the number stands at 204 and Juskow is still waiting. Some people have been on the list more than five years. Some die waiting.

Juskow, a 33-year-old single mother from Mattydale, needs a transplant because her diseased kidneys are failing. Since 2006, she's been on dialysis, a life-saving treatment that does the work of the kidneys by filtering waste, extra chemicals and fluid from her blood.

"If I could buy a kidney, I would in a heartbeat," Juskow said. "I have kids, ages 6 and 4. I want to see them graduate, get married and have kids."

There are nowhere near enough organs for the soaring number of people like Juskow awaiting transplants. About 43,937 Americans were on the waiting list in 1995. The number surpassed 100,000 last year. More than 76,000 of those people are awaiting a kidney, the organ in greatest demand.

During that same time period, the number of organ donors grew from 20,209 in 1995 to 27,958 last year. There was a brief drop in organs, though, from 2007 to 2008. Ironically, that decrease was caused, in part, by last year's spike in gasoline prices, which reduced automobile use and fatal car accidents -- a key source of potential organ donations.

The imbalance of supply and demand is expected to get worse as the diabetes epidemic grows. Diabetes is the most common cause of kidney failure.

About 15 Americans on the transplant list die each day. Four people on University's list died last year.

"I know when I put them on the list, a reasonable number will not survive the wait," said Dr. Amy L. Friedman, University's director of transplantation. "That is truly heartbreaking."

The illegal organ trade is centered in the Philippines, Eastern Europe and Egypt, said Arthur Caplan, a bioethics professor at the University of Pennsylvania who co-chairs a United Nations task force on organ trafficking. "The guys making these arrangements are the same people who traffic children for prostitution," he said.

The shortage also has raised questions about the fairness of the nation's organ allocation system and the ability of wealthy people to game the system.

"The national allocation system cannot and does not make any distinction of candidate priority based on wealth, celebrity or other purely social characteristics," the network said in a prepared statement.

Jobs got his transplant at Methodist University Hospital in Memphis. "He received a liver transplant because he was ... the sickest patient on the waiting list at the time a donor organ became available," the hospital said in a statement.

A loophole in the system, however, gives wealthy people an advantage.

That's because prospective patients are able to get on waiting lists at multiple transplant centers in numerous states as long as they can get to those centers within a few hours.

"Being able to be transplanted in a place that's far away from home can cost you and your family a lot of money," said Friedman, the University Hospital doctor. "It's not equally accessible to all patients."

Juskow, for example, said she cannot afford to get on out-of-state kidney waiting lists.

"Me being a single mom, financially, I just can't up and leave," she said.

Blood type, time spent on the waiting list, medical urgency and the distance between the donor and the recipient are some of the factors considered when allocating organs.

In addition to deceased donors, patients can get transplants from living donors. More than 6,000 people become live donors each year by offering a kidney, lobe of a lung, portion of the liver, pancreas or intestine to a loved one or friend.

"A live donor kidney is considered the gold standard because it is almost always better quality than a kidney from a deceased donor," Friedman said.

Getting more people to sign up as donors will ease the shortage, said Rob Kochik, executive director of the Finger Lakes Donor Recovery Network, a nonprofit that facilitates the donation and transplantation of organs and tissue in Central New York and the Finger Lakes region.

"This is a health care crisis with a cure," Kochik said.

But there's a fair amount of disagreement on how to increase the pool of donors.

Dave Undis, executive director of Lifesharers, a national nonprofit organ donor network, said the waiting list would shrink quickly if registered donors were given first dibs on organs when they become available. "People who don't want to be organ donors can have the leftovers if there are any," he said.

The problem with the system is it treats people who refuse to be organ donors the same as those who are registered, he said.

Under federal law, it is illegal to buy or sell organs.

But some groups like the American Association of Kidney Patients are lobbying for the creation of financial incentives to increase the number of donors. The Kidney Association would like to see lifelong health insurance benefits offered to living donors and funeral expenses paid for families who donate a relative's organs.

Caplan, the University of Pennsylvania bioethicist, said he has no problem with compensating living donors for costs like hotel expenses when they donate a kidney. But he believes it's wrong to help families with funeral expenses.

"Most people don't say if I had a funeral, or a T-shirt or $10,000, I would have donated my organs," Caplan said. "The opposition is more on religious, aesthetic and emotional grounds. I don't think the money would get you what people are hoping for."

Juskow believes it's impossible to put a price tag on a kidney. But she thinks it makes sense to offer living donors tax breaks or some other financial incentives.

Juskow was diagnosed in 2006 with interstitial nephritis, a disease that rapidly damaged her kidneys.

She still is in relatively good health, but fears she won't be by the time she works her way to the top of the list.

"Dialysis will take a toll on my body as I get older. This is the time I should have a transplant," Juskow said. "This is putting a hold on my life."